squirmingitch

It's been a while now since I had one of those meltdowns Jyn but I do remember them all too well. I remember having them hit me out of the blue after not having had one for a month & then wham! you're in the store & you just want to slide down to a sitting position & bawl out loud. ((((((JYN))))))))

Your bf sounds like a great guy so keep him around for a while.

BTW, Herb Ox bouillon is gluten free & says so right on the label. Both the chicken & the beef so now you can have bouillon hon.

I'm sure she was on another thread where we talked about it but it never hurts to repeat & remind. Thanks Karen.

Iodine can make the dh flare horribly for most of us so you can try going low iodine & see what happens. The low iodine diet can be found @ http://www.thyca.org/rai.htm#diet

Of course you will have leave out the gluten foods as thyroid cancer patients aren't necessarily celiac.

Jyn, my screen name took zero thought. When I was registering for the site & I needed to come up with a screen name, I sat there squirming & itching --- thus squirmingitch. However; it's a name I will be elated to loose one day! Perhaps then I will change it (like Prince did) to "The member formerly known as squirmingitch".    

Jyn, you need to remember that dh can present at any time for 2 yrs. or more even after going strict gluten-free. This is why dh is so vexing. How does one determine if it was food or simply a spontaneous outbreak? This is why my hubs & I will not eat anything that is produced on shared line, will not eat out, will only eat cert. gluten-free foods. This is how we keep from going crazy trying to figure out where the cc came from OR if it was spontaneous. The mental effects of this can be horrendous.

So, in short, in may or may not have been something you ate. And IF it was something you ate; it may have been the day before. It will screw your brain up & that's for sure!

Lisa, IF you are getting glutened & therefore getting dh then odds are that your GI issues will not be what you experienced before. When we have dh we tend not to have strong GI issues like say IH or any of the others who do not have dh so it would not be surprising that you're feeling different than before.

If you have been gluten-free for 4 years then you would not present with dh UNLESS you have been getting cc'd or glutened. You can test the rash by seeing if going low iodine makes it go away. If it does then you could be pretty darn sure you have been getting gluten from somewhere. BTW, the steroids will make dh better but the down side is that when the steroids are withdrawn; the rash comes back with a vengeance!

A biopsy of dh after being gluten-free for 4 years would come back negative. It certainly wouldn't come back positive. Did the doc take it from a clear place adjacent to an active lesion? If he took it on the lesion then he did it wrong. If it was done correctly then that contradicts that you are getting gluten from something EXCEPT for the fact that the steroids (topical or oral) will make the biopsy negative. So the biopsy that was done is completely useless whether it was taken correctly or not. It would take something like 2 months off the steroid creams before it will not affect the biopsy results.

Dearest Dani, I'm shocked & very,very sad at this news. I know you love both of your parents with all of your heart. I remember you posting photos of your mom's knees with the rash on them & thinking/wondering if that was dh & the other things you mentioned that made you think that she & your dad both could be celiac. As well as their thoughts on the subject of you being celiac.

The only thing I can say that others have not is that I am sure I've read numerous times that heart disease is also one of those things celiac is associated with. But then it seems like heart disease is associated with everything.

Aw Dani, I surely wish I could be there to hold you & let you cry on my shoulder until there were no more tears left. I'm crying for you now. No matter how old we are when we lose a parent; we are their baby & always will be.

Tight, tight hugs  (((((((((((((((((((((((((((((((((((((((((((((((((((((DANI)))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))

Yup. Gluteny cat food can end up glutening you. Take the pets grain free. BTW, dogs are allergic to wheat, corn & soy. And when was the last time you saw a cat ins. a field of corn eating the corn? Than why is it in their food? Way too many cats getting diabetes these days.

It doesn't sound like your rash acts like typical dh acts. Do you get it on both sides (bilaterally) at once?

There are many skin issues related to celiac disease & non celiac gluten intolerance --- yours could be any of a # of things. If you don't care about a dx then by all means go gluten free for a good 6 months & see what happens. Being gluten free certainly won't hurt you Beth. And your hives or whatever they are certainly seem to be tied to gluten consumption.

No, it is not more or less itchy. It just itches like NUTS always. It doesn't matter if you scratch or not. It doesn't matter if you put clay on it. It's just plain HELL. It is called the suicidal itch & that moniker is in medical texts as well as the brains of we who suffer with it. Does that answer your question?

tinpins has said she's not interested in Dapsone except maybe the topical form. I'm saying this for others who may come later & read this thread as well as the immediate. tinpins is allergic to sulfa as am I & Dapsone is in the sulfa class & it's iffy if she or I would be able to tolerate it even if she or I were willing to turn to oral Dapsone. I'm not sure what the topical will do as far as allergic reaction for either of us.

Refrigerator charts are good tinpins. You go girl!

A quick & I'm sure not all inclusive (b/c Murphy's Law deems I forget something  ) run down of iodine & a lot of these things are not listed on the thyca site now but were at one time. Here we go:

raisins & grapes

Watermelon

asparagus

all dairy

egg yolks --- whites are fine it's the yolk that carries the iodine

seafood

lima beans

turnip greens, mustard greens, spinach ---- "greens" as we call them in the south

peanuts b/c the skin carries the iodine

the skin of potatoes so peel them deeply

carrageenan (comes from kelp from the sea) watch out - I found it in sherbet & popsicles - not all brands but some. Carrageenan is a BITCH!

There are a few more names for derivatives of kelp or sea algae --- thyca lists them

white beans, kidney beans & a few more

iodized salt of course so use plain salt or sea salt

coconut, coconut milk, coconut flour

red dye #3

here's a link to the thyca low iodine diet:

http://www.thyca.org/rai.htm#diet

OH! And make sure ALL your meds, both OTC & prescription, are gluten free & iodine free --- have the pharmacist check & then you double check the pharmacist. Don't forget to check your vitamins --- often containing iodine -- beware.

I echo what Prickly said. And everyone's case is different. I hope you react like Prickly & the low iodine will do the trick for you quickly. Me, I'm 17 mos. & STILL iodine makes my dh go freaking insane. So only time will tell.

I DO have a good story to share with you guys today though. For the first time in 17 mos. I had potato salad! Ahhhhhhhhhhhhhhh, a small slice of heaven indeed! Since I couldn't have egg yolks b/c of the iodine then potato salad was out of the question. i tried 3 times making eggless mayo --- BIG FLOP! There is a product called Vegenaise (I used the original one) but it has to be shipped & kept refrigerated so you can't order it online & get it sent to you. None of my stores carried it; not even the health food store. FINALLY 1 local store began carrying it. HOORAY!!!!!!!!!! Maybe I've just been so long w/o mayo that I don't remember what good mayo tastes like but this stuff tastes like the very best Hellman's mayo. Truly! It  has some soy protein in it but it hasn't seemed to bother me. Maybe my gut has healed enough that I can tolerate a little soy now. And for the potato salad, I hard boiled an egg & removed & rinsed out  the yolk & just cut up the egg white. It was delicious!!!!! So this week I have had potato salad AND an egg white & sausage sandwich with mayo. Life just got a little bit more bearable.  Small victories.

Hi tinpins & welcome to the board. 

Hope is a good thing. But if it's dh then you may have a long row to hoe yet. But getting on the road to recovery is the first step & it does get better --- maybe not as fast as one wants but certainly it gets better.

If you have pets you need to make sure they are eating gluten free food --- grain free is the safest bet. Be sure to change them over gradually or they'll get sick from the sudden change.

If you don't want a dx or tests then your plan of action is quite simple --- strict gluten free --- it's no more complicated than that. As to a nutritionist..... you can find all the info. you need right here.

Learning the gluten free diet & getting it down pat carries a steep learning curve. The most innocuous foods can contain gluten so you must learn the rules & read every label EVERY time. 

Here are some links for you:

Oh you're most welcome Marcus!

Yes, you're right. And you had been gluten-free for 2 years so that didn't help your blood panel. IMHO you would need a super long gluten challenge to overcome the 2 years PLUS the (if you have dh) dh factor making it negative. And still you could turn up neg. on the blood. The problem is, if you have dh then you're probably going to have to wait & continue with eating gluten until the rash goes bonkers. And the rash can go bonkers all at once. Then you're in BIG trouble. My rash were here & there & here & there for years & then one day it went ever loving NUTS. Now remember that dh deposits the antibodies under the skin. Once they've been deposited you have to suffer for could be 2 years or even longer. You might be able to take Dapsone but that's not guaranteed --- plenty have not been able to tolerate Dapsone so you can't count on Dapsone being your answer.

All this is sort of a long way of saying ----- if gluten is hurting you then do you really need an "official dx"? You don't need anyone's permission to go gluten-free. You know that -- you went gluten-free before for 2 years. So unless there is some other valid reason that you must have that official dx then why not just save yourself some grief & go gluten-free now & never look back?

I can tell you that full blown dh is a BAAAAD MUTHA & I would tell anyone that if they can avoid it getting to that full blown point then do so without hesitation! Take a look in the dh photo bank at my photos & some of the others who have it really bad. You don't EVEN want to go there. If I could save just one person from experiencing the hell I've been through then I would dance with joy! There's a reason dh is called the suicidal itch & I know why.